Advanced NSCL lung cancer

Hello Maz123,

A very warm welcome to the lung forum, although I'm very sorry that you have the need to join.

I'm Derek, one of the community champions on here trying to help out where I can. I see that you're still having tests to establish your treatment plan so have no questions yet, but as soon as you make some progress feel free to ask away  and we'll do our best to answer based on our own experiences.

When you have a minute it would help if you could add to your own profile with a brief summary of your story and treatment. Adding this, and keeping it up to date if you can remember, helps other members tailor their replies to you. To do this on your home page click on the chair, top right, then "profile" and then "edit". Once you have written something remember to save it.

Do come back whenever you need, in the meantime my best wishes to you and your family,

Derek.

Hi Maz123

So very sorry that ayou have cause to be on here.

I do not want to give you false hope, however there are members in this group who have been diagnosed as 'incurable' and with palliative/supportive. treatment have and are living full lives.

I hope the MRI scan brings better news, and I wish you the best possible outcomes.

Kegsy x

Stay positive and although incurable, people can live for a long time with the treatments that are available so please stay positive in your mind. Incurable does not mean end of life like I thought it did. People can be palliative and live for years. It seems you may be still in the testing process and the wait is horrible. Every day feels like it’s dragging but keep distracted as much as you can for now. There’s a whole range of drugs available and if your offered immunotherapy I know so many people who have had good results from it and stopped growth. I know being told this will be hard to accept but stay strong for your beautiful children because they will be your strength through the treatment. Be kind to yourself and take each day as it comes x 

Thank you all. I am trying hard to remain positive, but it is very difficult when everything takes so long. They still don’t have the analysis back to say whether I would respond to targeted therapies. So while we’re waiting I’ve been put on the waiting list for chemo, which currently has a five week wait in my city. 

I think the hardest part was the waiting for us. I managed to push the treatment a few weeks earlier because I kept contacting the consultant via email asking for an earlier space. I suppose the worry is always will it progress a little more before chemo starts so want it to start as soon as possible. Chemo itself is a difficult treatment however everyone reacts different so use this time to build up some physical  strength eating the right foods keeping active and doing things with the children. The chemo can make you so tired and has a lot of dips before you start to feel a little better so this time you have before treatment starts use it wisely. Keep chasing up the analysis for targeted therapy. As much as you may want the chemo to start you don’t want to be rushed into a treatment plan. You need to have the right treatment. And if you do have any of the genetic mutations and eligible for target therapy it could be a game changer. You have age on your side ! Right now just try to have a positive mindset stay active and keep occupied with the kids because it really does become a battle with your own mental health through treatment. 

Hi,

Have read your posts which have helped with my own thought process and that my thoughts and feelings are ok. Hope you hear soon 

Hello, welcome to the only club you never want to join!  I’m here because my husband has stage 4 nsclc which has spread. He’s only 47 (I’m your age) so younger like you. He was diagnosed last April and is on keytruda since September 2025. He had some shrinkage of his tumours on this but had to stop recently due to chest infection (he has copd). He is back on it just this week!  He has been told a few times now that sad as it is, being young gives you an advantage (not that you want this diagnosis at all). They are keeping chemotherapy up their sleeves for now. He has had some side effects due to the immunotherapy (joint pain mostly) but we are still enjoying things. We made an effort to get ducks in a row (finances etc) done early on so we could just forget about cancer as much as possible and we steered clear of prognosis- treatment now is so tailored to the individual and there are some amazing stories of immunotherapy doing its wonders so I think the prognoses are meaningless and out of date anyway. It’s very tough in the beginning, I remember feeling floored and feeling physically sick but we are living as normally as possible and taking each day as it comes. The phrase “but not today…” helps a little when your mind races ahead with anxious thoughts of the future. If you have any questions or want to chat I’m here 

Rach 

Rach, thank you for sharing and glad your partner is doing well. At present still waitibg for biopsy results has been a week today so hopefully results wont take much longer. I am wanting them to come as MDT is tomorrow and if not in by then its abother week until the next one. Think the struggle is tgat when I know that something needs doung my patience somewhat lacks and I just want to get on with it.

Thank you again